Myeloproliferative disorders. Establishment of a European database to support the search for bone marrow donors
25.2.2021
Question for written answer E-001128/2021
to the Commission
Rule 138
Gianantonio Da Re (ID)
Myelofibrosis is a rare type of cancer of the bone marrow which, in Europe, according to the Orphanet registry, has an incidence of 0.1-1 per 100 000 people and a prevalence of 2.7 per 100 000. The average age at diagnosis is 65, but one in four patients is under the age of 56 and 11% are under the age of 46. Research in the field of myeloproliferative disorders has led to the development of drugs, such as ruxolitinib and fedratinib, which have shown an improvement in the long-term survival of patients. These discoveries have offered possible alternatives to stem cell transplantation, which is still, however, the only fully curative treatment option for myelofibrosis.
Even though the European Rare Diseases Registry Infrastructure facilitates research and the identification of data necessary for new discoveries and diagnoses, finding a compatible donor is still difficult in non-family donor registries.
In view of this:
- 1.Will the Commission establish a database to strengthen cooperation between Member States in the treatment of myeloproliferative disorders, thereby reducing the time taken to search for compatible donors?
- 2.How does the Commission intend to raise public awareness of the importance of haematopoietic stem cell donation?